Is this pouchitis?

It sounds like pouchitis to me.  I started my antibiotic a few minutes ago.  I have the same feeling you do.  I don’t usually have a fever some people do.  But I do have the urge to push and it’s very runny.  But I also have cuffitis so sometimes for me it’s hard to know the difference.  But today I just feel terrible.  

Keep us posted.  I hope you have an antibiotic on hand.  I’d start taking it right away.  I hope you start feeling better real soon. 

@Merai posted:

Hi everyone , I’m new to this site and i came across it when i was searching for my symptoms .

I had my j-poch since 2015 so I’m still new to this 😅 i had no troubles with my j-pouch what so ever until 4 days ago!

I’m having partially loose bowel movements, lower abdominal cramping, pelvic pain slightly, unable to pass gass, general feeling of discomfort and anus pressure.

is this pouchitis? Can anybody help me with this?

Pouchitis wouldn’t be my first guess. There are a number of possibilities, including partial obstruction as one and a GI infection as another. Those two possibilities tend to clear up on their own.

Scott - what other GI infection can a person get?  I was told if I am still pooping or have the runs I am not blocked.  So I figured if I am still going to the bathroom I don’t have a blockage.  Just wondering. Cause I always thought I had pouchitis.  Thank you.  

grandmaof1 I have experienced bowel obstruction. For several years I would have pain in my stomach more sick at my stomach sometimes throwing up. Then one time same symptoms but figured  stomach virus (diarrhea/throwing up) because it was all around me.  Then I got really sick. I could not eat or drink anything without throwing up and nothing but watery stuff coming out then Hopefully you are near to ones that know about j pouch as I suffered long time before getting relief.  Moved to different hospital with different doctor. Having meds and only IV the obstruction was corrected. Doctor wanted me in better condition before doing surgery. When opening me up part of my bowels were attached to my female parts and had scar tissue. Doctor took care of it and fixed the somewhat pouch prolapse. Doctor described to me that he thought the recent years I had bowel obstruction but it corrected itself but didn't the last time. I know I have said a lot but I figure if I can share my experience to shed light on things for another that is what I should do. On another subject when having issues asked doctor (different doctor) about other issues I was having and he said some kind of infection but not UC or Chron's.  Later diagnosed with cuffitis learning that is where the part left to connect pouch. Still part of my original stuff so really just UC way I look at it but given different name. Seems it becomes a different name according to location. UGH!!!! I am tired of learning and struggling. One thing I know without God I would not make it through each day. My prayer is that by sharing some of my experiences I can help another. Also prayer that more doctors will become knowledgeable about the J-pouch.  What symptoms do you have with the cuffitis? Asking because I always knew when I had pouchitis as I suffered with it for years. The last few years I have only been diagnosed with cuffitis. Now I am not sure if I am just struggling with the cuffitis or have the pouchitis again.

@grandmaof1 posted:

Scott - what other GI infection can a person get?  I was told if I am still pooping or have the runs I am not blocked.  So I figured if I am still going to the bathroom I don’t have a blockage.  Just wondering. Cause I always thought I had pouchitis.  Thank you.  

A partial blockage can behave quite differently than a complete blockage. A partial blockage is a narrowed part of the intestine that makes it harder to move stuff through, though it does work its way through eventually. In the meantime the area leading up to the narrowing gets stretched and a bit pressurized, which is quite uncomfortable. Most partial blockages clear up on their own, though dehydration can be a risk. Complete blockages are very serious problems, often requiring surgery to prevent bowel rupture.

A person can get a wide variety of GI infections, with a wide variety of symptom severity and treatment options. Viruses (like norovirus) are common. Bacteria (like C. diff, Salmonella, and Shigella) are a bit less common but usually more severe than viruses. Parasites (like Giardia) can cause long-lasting problems unless they are properly treated. GI infections can be caught from contaminated food or infected people.

Kk- my cuffitis is very painful with the urge to go.  My back hurts so bad.  Sometimes I sit in the bathroom and just shake because it feels like I have to go.  I am on Canasa suppository and a new one called Tacrolimus 2 mg suppository 2 times a day.  It is helping but not as it did at first.  It has to made at a specialty pharmacy and our insurance doesn’t cover it.  That is why many doctors don’t use it anymore.  So we pay out of pocket.  I just had my yearly scope done.  Everything else is fine except my cuffitis.  I have had it since 2018.  I am almost ready to go to a bag. The pain and the liquid diarrhea is so unreal.  My GI doctor said it’s like just like UC. It’s exhausting to have.  

What do you do for it?  I’d love any new advise.  It’s so appreciated.  

@grandmaof1 posted:

Kk- my cuffitis is very painful with the urge to go.  My back hurts so bad.  Sometimes I sit in the bathroom and just shake because it feels like I have to go.  I am on Canasa suppository and a new one called Tacrolimus 2 mg suppository 2 times a day.  It is helping but not as it did at first.  It has to made at a specialty pharmacy and our insurance doesn’t cover it.  That is why many doctors don’t use it anymore.  So we pay out of pocket.  I just had my yearly scope done.  Everything else is fine except my cuffitis.  I have had it since 2018.  I am almost ready to go to a bag. The pain and the liquid diarrhea is so unreal.  My GI doctor said it’s like just like UC. It’s exhausting to have.  

What do you do for it?  I’d love any new advise.  It’s so appreciated.  

If your only problem is cuffitis, and it’s bad enough to consider surgery, then there is a surgical procedure to correct it, called “pouch advancement with mucosectomy.” The rectal cuff is removed and the pouch is moved right up to the anal canal and hand-sewn there. It’s a technically difficult procedure that I think should only be done by a surgeon with plenty of experience at it, and it does carry an increased risk of leakage or incontinence. I think I would choose it over going directly to an external bag, but each of us has different preferences and risk tolerance.

Sure not left with much of a choice that is for sure.  Thank you Scott.  

I’m sorry this is happening to you. I’ve had cuffitis and bleeding off & on for many years...sometimes self induced...it’s as as if I still have UC when it happens (side note: I cannot eat any nuts especially almonds or raw veggies like carrots, causes cuff issues/ bleeding & throbbing for me) also, stress, lack of sleep... my primary doc told me the pulsing/ throbbing of the cuff/ pouch is like a migrane headache...I use a gas x pill & 1 ibuprofen (not often only when it’s severe that I can’t sleep) but that’s what works for me it’s hard being on & off the toilet & resting is key to feeling better/ quieting the inflammation. I’m not sure if you have access to a detachable shower head but the warm flow of water can relax the area or a tub or warm compress.  Please hang in there & rest when you can. I feel like our Jpouches are a reservoir, not meant to hold stool but a temporary spot to store it so going when you have the urge is good. Holding it too long is not good. Have you tried probiotics, plain yogurt or yogurt smoothies? Soft foods to go over/ pass over the cuff.

Are you doing better???

I think you should make an appointment with Gastro ASAP

Hi everyone, thank you so much for ur support I appreciate it , so apparently it wasn’t pouchitis (thank god!) something was wrong with my ovaries and that cussed the issue , nothing serious and I’m all better 😋♥️

@Merai posted:

Hi everyone, thank you so much for ur support I appreciate it , so apparently it wasn’t pouchitis (thank god!) something was wrong with my ovaries and that cussed the issue , nothing serious and I’m all better 😋♥️

Thanks for the update!!! Glad you are better

What happened to your ovaries???